I realize my last post was not very explanatory. At that time I was a COMPLETE mess. I couldn't even think about my diagnosis. Nor could I think about the next step. I was completely and totally overwhelmed. Now that I am home and have been able to calm down, think, and hug my kids, my boxing gloves are back on. I am in research mode.
The study/studies that my oncologist would like me in are trials that focus on attacking the BRAF gene mutation. In December, I had blood tests done to see if I contained the BRAF mutation. I did. BRAF is a protein that plays a major role in the survival and growth of cancer cells and is mutated in a majority of patients with melanoma.
At this time there are 4-5 trials that are focusing on attacking the BRAF mutation for patients with melanoma. I have made several phone calls today, but for various reasons was unable to get ahold of anyone. I am hoping that I get return phone calls tomorrow.
I am ok with participating in a trial. The difficult part will be the cost. We are still waiting to hear if insurance will cover the cost or not. At this point we do not have any other options. There are only 7 FDA approved drugs for melanoma. I have tried 5 of them. The remaining two are not as effective as the BRAF trials are. So, whether or not insurance covers them, I will have to participate in one. So, if anyone has any good ideas for fundraisers please share. A fundraiser will probably have to take place in the near future.
Here are the trials that we are looking in to:
AZD6244 The bad part about this trial is the dosage starts out low, and it is combined with Diacarbizine, which I have already been on.
PLX4032 name has since been changed to RO5185426 This is the one that I really want to get in to. I am willing to go where ever I need to to make that possible.
GSK B Inhibitor This trial is at MD Anderson and will be starting in 3-4 weeks. They are only given 60 slots for the whole campus, I will find out this week (hopefully) if I can get in.
If I can not get in to any of those trials, the next best option is Tesetaxal which is also at MD Anderson.
If you want to know more about those drugs, click on the names and you can read some more. Most have few side effects, or at least not nearly as many as the biochemotherapy (thank goodness!). I should still be able to take care of the kids and do things, which, let's be honest, that is what I want. There are many other trials, but given my circumstances, these are the best options for me. Where we live does not have any options. At some point we will probably have to consider moving to some place that has a better cancer center.
The trials that we are looking at are nothing like what I have participated in in the past. They are pills. In other words, we (or just I) will fly to Houston, take a pill in the Dr office, and go home. We will be looking in to Corporate Angels and Ground Angels again. These are two wonderful organizations that offer free flights (Corporate Angels) to Houston for cancer patients. Ground Angels offer free rides for cancer patients. During Biochemotherapy we really utilized these services. The bad part is that Corporate Angels is now a 3 hour drive from our home. However, it beats the 11 hour drive that we have been making! However, if I end up participating in a trial not in Houston, the cost of travel will come out of our own pockets. I am currently looking at a few trials at Sloan-Kettering in New York, NY.
So many of you have asked how you can help. Fundraising ideas would be great. We discovered from the last (stupid) round of chemo that gift cards to restaurants and food (especially food we could put in the freezer for later) were quite possibly the best gifts ever!! I don't eat much on chemo, however, my husband feels like he needs too!
The outpouring of love, prayers, comments, emails, and phone calls has been overwhelming and so greatly appreciated. I realize that God knows that I am one tough cookie. He knows that I am a fighter. But he apparently forgot that I can also be a total bitch. He has certainly heard a few choice words these past few days. But, I am getting over it. It's not his fault. Well, not totally his fault. This is just my life. This battle will be constant. I have a very aggressive form of cancer. Recurrence is simply going to be a fact of life for me. Do I like it? Hell no! But, I was not given a choice in the matter. So, until some great man or woman finds a cure all for melanoma I will simply keep on fighting. No if, ands, or buts. I will fight and I will fight like hell. No question.
Please, please keep praying. I know so many of you out there are rooting for me and praying for me. I will never, ever be able to express how grateful I am for those simple things. I do believe that God is listening. For example, I really wanted to have repeat PET scans in January, but, for whatever reason, that did not happen. If we would of had them in January, more than likely this tiny little spot would not have shown up. Therefore, we would not have returned for 3 more months. God only knows how much it would of spread by that time. Scary, right?! See, so even though my cancer did come back, it could of been so much worse.
6 days ago